A trailblazing study for both the Island hospital and the country just enrolled its first participant last Friday in an effort to better understand alpha-gal syndrome, the tick-borne condition that causes an allergy to mammalian products like meat and dairy.
Martha’s Vineyard Hospital (MVH), a member of Mass General Brigham, plans to recruit and follow 300 people in this research study that Claire Seguin, president and COO of the Island hospital, said is a “first-of-its-kind study” as well as “first in the country that [she’s] aware of.”
The study, led by Mass General Brigham infectious disease expert Jacob Lemieux and Ellen McMahon, chief of medicine and ambulatory medical director for MVH, aims to answer “who develops alpha-gal syndrome after lone star tick exposure, who becomes sensitized without developing symptoms, and what biological or demographic factors may influence risk,” according to a press release from the hospital. Some people can have an alpha-gal antibody but not develop an allergy.
There is a second study, which Seguin called a point prevalence study, that is also in the works, and would use existing bloodwork samples to understand what percentage of the Island population has alpha-gal antibodies compared with Nantucket and Boston. The team needs to nail down a final date, but the idea is to start in early September. Seguin said the research hopes to answer the question, “Is there more of it here than anywhere else?”
The studies are run out of the hospital’s new alpha-gal research center, located in West Tisbury at the former location of the Indian Hill Medical Center.
There’s been a significant increase in testing for alpha-gal at the hospital in recent years, and also more positive tests (though a positive test doesn’t always mean a diagnosis, because a person can have the antibodies but not develop the allergy), and, so far, since opening in June, the hospital’s tick clinic, another effort to address the issue, has seen 250 patients. But there’s still a lot that’s unknown about alpha-gal, and researchers hope to “identify immune, inflammatory, and other markers that could help predict who is most likely to develop the condition,” according to a press release from the hospital.
“Alpha-gal syndrome is an emerging health concern in our region, but there are still many unanswered questions about why some people develop the condition after a tick bite while others do not,” Lemieux said in a press release from the hospital. “By following participants over time, we hope to better understand the biological and environmental factors that influence risk and generate information that can help guide future diagnosis, prevention, and patient care.”
What Seguin said they do know is that the allergy can wane over time, but that as soon as a person is bitten again, the severity tends to go back up.
There are several criteria for a person to be a candidate for this study. Participants must be at least 15 years old, reside on Martha’s Vineyard for more than three months each year, and have been bitten by a lone star tick or exposed to larvae within seven days before being tested for the study; exposure is based on the description of the tick’s appearance, behavior, or bite characteristics, or can be colluded by a photo, saved tick, or clinician assessment. Those under 18 must have written informed consent from a parent or legal guardian.
Those who can’t participate in the study are people who have a known primary food allergy that is unrelated to alpha-gal, such as allergies to peanuts or shellfish, or who take certain steroids or medications.
Visits for the study are at “relatively infrequent intervals,” according to the hospital’s protocol; there is a required baseline visit, then visits after three months, six months, 12 months, 18 months, and 24 months. Additional “trigger” visits are only needed after “suspected reactions,” according to the hospital. Those enrolled in the study can be compensated up to $100 based on the samples provided, and receive $50 for every follow-up or “trigger” visit completed.
Tick-bite patients at the hospital’s tick clinic may be recruited for the study.
Seguin said this type of work wouldn’t be possible without assistance from Mass General Brigham and the research infrastructure provided through the regional healthcare system; she said it is the first foray into leading research for the Island hospital.
“We’re in this unique time and a unique relationship with a couple of major academic medical centers,” Seguin told The Times.
Seguin said the hospital runs a local communications group with other Island entities focused on ticks, and is working with several of them — from local physicians to epidemiologists — on this study.
Close to $2 million was raised for the two initial studies. But as the research continues and papers are published, the hospital hopes to apply for bigger grants, such as from the National Institutes of Health.
So glad to hear this! Hard to believe that some folks here on the Vineyard still don’t know about alpha-gal or belittle its consequences. My son and I both have alpha-gal. Sadly I have an allergy to raw shellfish or I’d be happy to try to join the cohort. I’ve probably had AG longer than it was diagnosed and now seemingly have traded the constant nausea in for hives. Just selfishly, I’d be so delighted to be able to eat a juicy rare hamburger!
Nice to MVH taking the lead on understanding this. Many across the country will benefit.